For goodness sake...whats going on with your body? While I am very, very happy this isn't being caused by cancer, Im am distressed to hear they don't know what is causing your symptoms so they don't know how to treat it. When I was coming off the steroids I slept almost constantly the first few days after reducing the dose, and I felt horrible. So I can definitely see the exhaustion aspect of it. Have they mentioned running any other tests to rule more things out?
You are always being so positive and giving everyone here support, so please know we are all here for you on the days you need support. We want to be here for you.
If it makes you smile even a little, I want you to know that when my balance was off, my kids called me John Wayne. They would say..oh, Mom is walking like John Wayne again.
I definitely pray that God guides your doctors into finding out what is causing this and getting rid of these nasty symptoms ASAP. Big hugs to you.